Reality of my ME/CFS

[AndyPandy]

@kristysmiles Happy Birthday!

 

[Snowdrop]

@kristysmiles

Happy Birthday.
I've been reading your thread here and I'm so sorry to hear about your problems with being believed.
Not that it's unusual as you must by now know.
I don't have any help as to a Dr but I do have a few suggestions that perhaps you already have in hand.

First, develop a strategy for how you will approach Dr's. Giving this some forethought will help you through the inevitable BS you will confront. Choosing how you communicate affects how you will be responded to. Develop this tool.
Have a look here maybe: http://phoenixrising.me/treating-cf...drome-mecfs-doctor-visit-step-one-preparation

Keep good records of interactions and all reports/tests/labs.

Get your family and friends on side. Let them do some of the work (research etc). Get them to educate themselves for the long run so that they can advocate for you.

Find what supplements might be useful to start right away. I'm thinking of anything that might help with inflammation.
http://forums.phoenixrising.me/inde...ry-supplements-resveratrol-and-curcumin.1612/

I'm sorry to say that the sites I linked to are from a site search and I have not read them.
It's getting late here (only 7PM but I'm starting to struggle).
wishing you the best,
Snowdrop

 

[Gingergrrl]

@Gingergrrl43
I've been slacking at making an appointment with a private doctor, mostly because I just don't know who to see. Being in the military, any number of things could have caused or aggravated it.

I think the GI issues may be a bigger issue than I orginally thought. My doctor put me on Nexium last week, since I was having chest pain that was indicative of acid reflux (didn't know you could have that eating health at 23, today's my birthday! ) Not sure it was the Nexium, but I've felt like I've had an increase in energy since I've been on it. They've tested me for celiac previously, but I'm wondering if it's GI related (especially since Colon cancer runs in the family) since this medication has had such a big impact. I have another appointment in August, so maybe I'l inquire about further GI-related testing.

I theorize that ME/CFS type symptoms can be caused by a wide range of things, because if a major bodily system is acting abnormally I imagine it affects all of them. Like a chain reaction, though I feel that there must be something in the brain that is unable to fix or prevents the body from fixing whatever sets it off. Bacteria and parasites are the first things that come to mind for GI symtpoms. Thoughts?

@kristysmiles First, Happy Birthday!!! And I am glad that the Nexium is helping you so much, that is great. I do think you should get further GI testing if you can (stool testing, food sensitivity testing, SIBO and leaky gut) but this will all take a private doctor or ND and doubt the army will cover any of it. Best wishes whichever way you decide to proceed.

 

[kristysmiles]

@AndyPandy Thank you!


@Snowdrop I've read that before. I think my issues with doctors is a combination of them not believing anything is wrong or that it's as bad as I sad, as well as noticing that I don't act sick. My psychiatrist says that I mask things from people, so basically I could be dying and outwardly everyone would think things were fine. She literally makes me explain how I feel about everything I say, because I say all these awful things are happening, but I don't portray any of the emotion that I feel about what I'm saying. I'm the person that can talk about awful things in a calm voice (not sure why). I think it's a self-defense mechanism to keep me from reliving those emotions every time I have to talk about things that upset me. I'm getting neuro-psych testing done today, so maybe that will show something.

@Gingergrrl43 Definitely will look in the the GI testing, my parents will be in town in two weeks so hopefully they will be able to help me find a suitable doctor and drive me around for visits (explaining things to doctors is tiring!). My mom is also trying to get me a chiropractor referral. I've had two previous neck (whiplash type) injuries, and I've started to experience tingling and numbness in my left arm. Hoping a chiropractor might be able to help or provide guidance. The Army referred me to see one when the injuries first happened, but it was a 3-month wait, and then they sent me to Korea and then Hawaii.

 

[Gingergrrl]

I think my issues with doctors is a combination of them not believing anything is wrong or that it's as bad as I sad, as well as noticing that I don't act sick. My psychiatrist says that I mask things from people, so basically I could be dying and outwardly everyone would think things were fine. She literally makes me explain how I feel about everything I say, because I say all these awful things are happening, but I don't portray any of the emotion that I feel about what I'm saying. I'm the person that can talk about awful things in a calm voice (not sure why). I think it's a self-defense mechanism to keep me from reliving those emotions every time I have to talk about things that upset me. I'm getting neuro-psych testing done today, so maybe that will show something.

@Gingergrrl43 Definitely will look in the the GI testing, my parents will be in town in two weeks so hopefully they will be able to help me find a suitable doctor and drive me around for visits (explaining things to doctors is tiring!). My mom is also trying to get me a chiropractor referral. I've had two previous neck (whiplash type) injuries, and I've started to experience tingling and numbness in my left arm. Hoping a chiropractor might be able to help or provide guidance. The Army referred me to see one when the injuries first happened, but it was a 3-month wait, and then they sent me to Korea and then Hawaii.[/USER]

@[USER=15034]kristysmiles I totally understand the first part re: doctors not believing anything is wrong but if you are able to see a true CFS specialist in the future, you will not have that experience. As far as masking things from people, I understand this too and sometimes I do this when I do not want to worry someone or feel that they are not trustworthy so I keep it private. But there are other times I could be talking about a horribly traumatic event but reciting it with no emotion as if I were giving someone a grocery list. I think it is a way of self-protection when the content of our words does not match our affect so we compartmentalize and do not have to keep re-living the trauma.

As far as the GI testing, I am so glad your parents will be in town shortly and can help you. I've always wondered how whiplash could play a role and there are some other threads discussing this issue (I think re: the Atlas nerve or Vagus nerve- I get confused re: the science of it.) I was in a horrible car accident in 2006 where my car flipped upside down and I had very bad whiplash. However, I did not get sick with CFS until after mono in 2012 so I do not think it is related in my case.[/user]

 

[stevesayshi]

Hi Kristy, I am recently ill myself. I have no idea how to navigate the medical system, but have some suggestions for a few easy things to try so you can function in the mean time. I had similar cardiac symptoms so I looked into what they gave heart failure patients. Commonly available supplements are d-ribose (up to 15 or 20 grams a day!), CoQ10 (preferably ubiquinol form), l-carnitine (various forms), and alpha lipoic acid. Niacinamide (B3) can help with stress, brain fog, and sleep. N-acetylglucosamine is another good anti-inflammatory.

This won't help you get to the bottom of your situation, but for now, anything that can help keep you on your feet might be useful right? Good luck.

 

[Olena]

Hello, Kristy! How are you feeling now? I was hoping that you get improvement. Happiness on Valentine's Day. There are people who love you and want you to be happy

 

[Justin30]

Yeah I just read through this thread and wow does this sound like what I went through when I first got sick from all the symptoms to the whiplash injuries. Like a mirror image of my symtoms.

This thread is old but I truly hope that you are feeling better on this Valentines Day.

I read this, hear all of you, know the disease had been around for 60-100 yrs and for long people with power, esteem and high positions in the medical field have blunted any sort progress with these complex neuro-immune diseases. Dr's just think your crazy...Well hopefully with all yhe big news this year we will get somewhere and hopefully sooner than later.

Justin

 

[Deltrus]

Wow your CFS is a lot like mine. I get chest pains, sensitivity to heat, pain behind my right eye, hypersomnia, twitches/tremor, concentration/memory problems, right jaw pain, blurry vision, tinnitus, constipation.

May I ask, do you also get some weird triggers for fatigue, such as doing very light work at a job, or driving for 1+ hours? Does pushing past fatigue cause heart rhythym disruption, and feelings of inflammation in your upper chest? These are characteristics of my fatigue.

I'm male unlike you though.

Phenibut at doses of 2-3 g 100% cures my CFS.

I think that the problem is caused by some type of calcium channel upregulation/dysfunction. Overactivity of certain ion channels can cause blood vessels to contract lowering microcirculation, neurons to fire, muscles to twitch. Then cell metabolism problems start from lack of blood flow and constant tension, inflammation starts etc. Perhaps it is caused by a virus, because the issue for me started in my right chest/arm/shoulder and spread outwards. I had pericarditis a few times also.

It's also possible that viral infection of nerves causes nerve integrity to fell, letting positive ions flow into the cells and causing the above issues.


Recently I've been getting nocturnal seizures that only happen during dreams. Over 10 seconds, I get an increasing intensity in my right head, like a car slowly revving up, and at the same time I get increasingly loud tinnitus.

I don't know, I feel like you and I may be part of a similar CFS phenotype, not the same as a few others.

 

[Justin30]

Wow your CFS is a lot like mine. I get chest pains, sensitivity to heat, pain behind my right eye, hypersomnia, twitches/tremor, concentration/memory problems, right jaw pain, blurry vision, tinnitus, constipation.

May I ask, do you also get some weird triggers for fatigue, such as doing very light work at a job, or driving for 1+ hours? Does pushing past fatigue cause heart rhythym disruption, and feelings of inflammation in your upper chest? These are characteristics of my fatigue.

I'm male unlike you though.

Phenibut at doses of 2-3 g 100% cures my CFS.

As I start feeling the effects of the drug, I notice a lot more circulation and feelings of blood flow around my gut and intestines. Vision gets clear, gut motility increases, mind clears etc.

I think that the problem is caused by some type of calcium channel upregulation/dysfunction. Overactivity of certain ion channels can cause blood vessels to contract lowering microcirculation, neurons to fire, muscles to twitch. Then cell metabolism problems start from lack of blood flow and constant tension, inflammation starts etc. Perhaps it is caused by a virus, because the issue for me started in my right chest/arm/shoulder and spread outwards. I had pericarditis a few times also.

It's also possible that viral infection of nerves causes nerve integrity to fell, letting positive ions flow into the cells and causing the above issues.


Recently I've been getting nocturnal seizures that only happen during dreams. Over 10 seconds, I get an increasing intensity in my right head, like a car slowly revving up, and at the same time I get increasingly loud tinnitus.

I don't know, I feel like you and I may be part of a similar CFS phenotype, not the same as a few others.

Im a male too when do you take the phenibut?

I have had the chest pains off and on but they are quite strong right now, blurry vision, constipation, twitching, fatigue, swollen glands, brain fog, achey joints.

Swollen glands are not a regular symptoms for me.

Thanks

Justin

 

[Deltrus]

Im a male too when do you take the phenibut?

I have had the chest pains off and on but they are quite strong right now, blurry vision, constipation, twitching, fatigue, swollen glands, brain fog, achey joints.

Swollen glands are not a regular symptoms for me.

Thanks

Justin

I don't take it often, because high dose isn't sustainable and so you have to go through withdrawals afterwards too which make me even more dysfunctional than normal. It takes around 3-4 hours to kick in. I'm worried about excitatory kindling so I don't take it for months at a time now.

I am mostly interested in how the drug's effects relate to the pathology of my disease. Lavender oil aroma gives a similar effect but I get worse fatigue during withdrawal. It also has an effect on ion channels.

I also get achey joints and swollen lymphnodes, only on my right side though. Pain, and muscle dysfunction are only on my right side.

 

[Aurator]

I don't take it often, because high dose isn't sustainable and so you have to go through withdrawals afterwards too which make me even more dysfunctional than normal. It takes around 3-4 hours to kick in. I'm worried about excitatory kindling so I don't take it for months at a time now.

I am mostly interested in how the drug's effects relate to the pathology of my disease. Lavender oil aroma gives a similar effect but I get worse fatigue during withdrawal. It also has an effect on ion channels.

I also get achey joints and swollen lymphnodes, only on my right side though. Pain, and muscle dysfunction are only on my right side.

What do you mean then by phenibut 100% cures your CFS if you still have problems?

 

[Deltrus]

Cures it for 2 days then it gets tolerance, and the drug isn't sustainable or healthy for your receptors to use nonstop at higher doses.

 

[Aurator]

Cures it for 2 days then it gets tolerance, and the drug isn't sustainable or healthy for your receptors to use nonstop at higher doses.

Presumably you mean it alleviates your CFS symptoms for two days, not cures the illness.

Phenibut has hypnotic and anxiolytic effects chiefly, so I can see why it would help if insomnia or anxiety were troublesome. But CFS is generally a bit more than insomnia and anxiety, and a two day efficacy window isn't going to be much use in staving off the dreaded PEM, so it's difficult to see how it can be regarded as alleviating CFS, properly speaking, let alone curing it. I've taken phenibut several times experimentally; the effect was not unpleasant, but it was certainly no cure.

 

[kristysmiles]

Hello, Kristy! How are you feeling now? I was hoping that you get improvement. Happiness on Valentine's Day. There are people who love you and want you to be happy

Hey @Olena
Overall I think I'm doing better. I still have weird symptoms that pop up every now and then, but I've been able to do more on a day to day basis. I've been really strict with my routine, and changed my mindset and expectations. I let people know up front if I am invited to an activity I might struggle with, and I listen to my body. I would consider myself physically fit compared to the average American, so most people don't even notice a difference. I completely stopped drinking alcohol, so there's no reason for me to disrupt my sleep schedule to stay out late with friends.

I've been trying to build up my physical tolerance to activity, by doing weight training. I figured if I can increase my muscle strength I can do more with less. It seems to be working, and the workout supplements I take have the 600mg of N-Acetyl Cystenine that some people have recommended to help with the fatigue. Honestly, I feel a lot better when I take the workout supplements and do a workout, then on days I don't. Hopefully, it's not leading to a big crash in the near future. *fingers crossed

My sleep is still shaky, and I've got a lot on my plate right now, but I'm optimistic about the improvements.

Thanks for the Valentine's Wishes! Hoping you've seen some improvement, as well.

 

[kristysmiles]

May I ask, do you also get some weird triggers for fatigue, such as doing very light work at a job, or driving for 1+ hours? Does pushing past fatigue cause heart rhythym disruption, and feelings of inflammation in your upper chest? These are characteristics of my fatigue.

@Deltrus
I do have some weird triggers. I'm not sure if this is why, but I've noticed if I have to do something I don't particularly want to do my symptoms are worse. I'm sure there's some mental trigger for a physiological response that sends signals to the brain for stimulation for the things we need/want to do. Driving is terrible for me, I get headaches, and feel terrible. I tell people up front that I don't like driving, except now I'm prone to car sickness. So depending on who it is, I have to weigh the options of flares vs car sickness.

I would say that I have something similar to a heart rhythm disruption. I don't know if it's an overexertion thing, or if it just happens sporadically. Cardiology only found idiopathic tachycardia spikes, but the treatment (beta blockers) would not be worth the side effects in someone with a fatigue disorder. It doesn't happen often enough for me to consider treating it. I would assume the inflammation in the chest, would be similar to the weird chest pain I get sometimes (doctors originally thought it was GERD).

@Deltrus @Justin30
Did either of you serve in the Military or travel to the Middle East? My symptoms started after I got back from Iraq, I got numerous vaccines before I went there (smallpox, anthrax, etc), and had numerous exposures while I was there. So I'm not really sure what caused my viral-like trigger. Just wanted to see if we had any similarities in that regards.

 

[Justin30]

No i didnt....all i know is that be careful when pushing it. I was ok for several months just felt a bit wierd at times and then tried and old activity of mine for 1.5 weeks pushed to hard on 1 day and i could feel the neuro-crash starting....I have been mostly bed and housebound since...scary....it triggered new symptoms too...

I am happy that you are doing good and hope that you keep improving

 

[Deltrus]

Nope, I didn't travel out of province at all. I'm going to try out oxymatrine for coxsackie b, I'l let you know how I respond. I'm just trying it blindly. I think my main trigger was the reoccurring pericarditis for 2-3 years, the main cause of that is viral (herpesvirus, coxsackie b). Although I got really bad after that period, before that my metabolism was a bit weird, I would have constipation, light fatigue, and hives from heat. The heat hives in particular just appeared one day, it was weird. Perhaps some metabolic pathway got messed up and I got a immunodeficiency stemming from that. Something weird atm is that I'm trying a multivitamin complete with trace minerals etc, and it is giving me tinnitus, which people almost never get when taking a multivitamin.

 

[digital dog]

I have seen a number of documentaries that uncover how dangerous the vaccines and anti-malaria tablets are for people being deployed.
If your doctors and psychiatrists are working for the army then they will do everything they can to dispute this.
If you start on psychotropic drugs you will have a far bigger problem down the line. Avoid then like the plague.
My personal opinion is the you have been severely damaged by neurotoxic chemicals and need your brain to recover.
Research all you can about this and be informed. Do not allow yourself to be bullied and try to see the bigger picture.
I am so sorry. I can't write any more as I am so angry.

 

[digital dog]

I also read that the army are notorious in experimenting with vaccines in the army.